TRIPLE POSITIVE GROUP
Comments
-
I had a melanoma on my leg and it was diagnosed 7 days before I was diagnosed with my BC. It was teenie and tiny and on the back of my calf, which is apparently one of the top places that women get them, but it was very freaky nonetheless.
Oh and I was 34.
0 -
TonLee - I appreciate your thoughts!
melster - I go for once a year derm checks and my dermatologist also told me that the back of the calf is a popular place for skin cancer to start. She also said any new spots that develop in the area treated by rads should be checked as well. Just FYI.
0 -
I am a newbie, triple + with a few questions. Why does it seem as if the Drs. think HER2+ is a "mixed" diagnosis? Is that because they have Herceptin to treat it? Also, I started chemo a few weeks ago, but have not started Herceptin. I am doing chemo prior to surgery to shrink my tumors. When should I start/have started the Herceptin? I thought it was conjunctive with chemo? I know I need to ask my Dr. - am awaiting a reply.
Secondly, when do you start the hormones for ER/PR+? Thanks in advance, I am again a newbie wading through all this new information!
Heather
0 -
TonLee....
Sounds like a SNL skit!0 -
Heather214 ....
Welcome.
Both adriamycin and herceptin present significant cardiac risk so they are longer given together. You will likely start herceptin with taxol after your AC regimen.
I also had neoadjuvant TC chemo and that was given with herceptin hence TCH. After my irst 6 TCH , I had another11 herceptin only infusions totalling 17 herceptin during the course of one year. I had my lumpectomy soon after my final chemo.
There is some diversity in when hormone therapy is started.I started AI therapy post rads. One MO was planning to start me after herceptin was finished.....one year mark.0 -
Tonlee - hilarious, thanks for sharing
Heather - welcome. There are several different chemo regimens, those that contain Adriamycin or it's relative Ellence (Epirubicin) do not usually have Herceptin given at the same time due to the cardiac risks. Herceptin is usually given in combo with Taxol or Taxotere once the other chemo cocktail has been completed.
Re: mixed diagnosis - I remember the radiation oncologists nurse telling me I was 'lucky' to be triple positive. I didn't feel that lucky at the time, they seem to forget that HER2 + still tends to be a more aggressive type of cancer and the treatment does tend to drag on.
I was placed on hormone therapy post rads.
I wish you well in your treatment.0 -
hi ladies...trying to catch up but can't read back all these pages...
as for melanoma/BC - i was told the same thing, there was a link. For those of us who had rads that is the place you should be checking for new spots. Check your feet/ankles too, i was told this was a hot spot for young women aswell. My derm wants to see me every 6mos or so to check for any new areas of concern. What i think is interesting is that both my BS's (i had 2 because one left the hospital) specialized in both breast and melanoma.
0 -
This Melanoma/BC discussion is very interesting. I had a pre-cancerous mole taken off the back if my calf a couple years ago. And my BS specializes in both BC and Melanoma. I thought that was very strange the first time I saw it on the paperwork from his office. Now it all makes sense. It also reminds me that it has been over a year since I saw my Dermatologist. I was going every year in the fall, but last fall I was a little distracted. I guess I will have to add another appt to my schedule.
0 -
Welcome, Heather214. Bryona, another triple positive, was on the same regimen you're on and I think she started Herceptin when she started Taxol.
0 -
Welcome Heather. Hang in there.
Tonlee, omg, so funny. you will be a legend there! Bet you don't have anyone bothering you, although I am picturing them backing away slowly...LOL0 -
heather - this is the standard approach for the AC-TH combo. Websister is absolutely correct that they separate the anthracycline portion of your chemo (Adriamycin) from the Herceptin (which will be given with the taxane) because they do not want to compound the cardiotoxic qualities of both drugs simultaneously.
tonlee - sounds like an interesting day at the gym, lol!
I have a long history of skin cancer - had the first one 20 years ago in a place the sun don't shine
I have had at least 20 of them removed since then, but at the time I was diagnosed with BC I actually had three at once, first time for that - all of mine have been basal cell carcinomas. My MO and my derm went to medical school together.0 -
This info about melanoma is interesting. A week before I was dx with BC I had a mole removed that came back suspicious. When I mentioned this to my BS she told me "I was being picked on" as those cells look so different. But no mention of a higher risk. I just went back to see dermatologist and told him about my BC and he mentioned nothing but removed another mole to test. Should receive the result this week. I have been thinking about changing dermatologist ..Will have to look into this further.
0 -
Heather214 Welcome! The good thing about being triple positive is you have all these different "weapons" to fight the cancer. The bad thing is, you've got cancer
Don't have anything more to add about what the crew has already said about why you are not currently getting Herceptin. It may make for a longer journey but the Adriamycin is really strong stuff. You want to hit it hard so it won't come back.Tonlee you had way too many "senior" moments today for a woman so young.
0 -
TonLee, i'd just blame cancer, it deserves the blame.
0 -
SpecialK: I too am (and have been for years) plagued with basal cells but one of my brothers just had a melanoma removed. Hey, I always attribute it to being born and raised in the Florida sun and doing all the outside things, running, scuba diving, etc. I guess I need to make sure my dermatologist is clearly aware that I had breast cancer, although I'm checked every 6 months. I like the PA better than the dermatologist so I go to her instead of him.
0 -
Cypher...yes I have 2 separate masses which appeared in 3 months.
0 -
Hi Everyone and welcome to anyone who is new---like it was said a wealth of infor here and I read all the time. so keep it coming. I keep on learning but then I forget but some things stay with me. and I forgot I did have cancer on my face ((is that melanoma?) and my arm-bt it was no big deal and I'm not a sun person at all. So see I forgot all about that. I mean it was not serious.
I'm still watching about Boston. Oh I have to turn it off.
0 -
Tonlee - So funny! I almost spit my coffee.
Rozem - when you say both your BS were skin/breast specialists does that mean my new one (your old one) is? I have my pathology report meeting with him next week. Will want to ask about that!!
To all: I start radiation either next week or Apr 29. I am freaking out a bit about it. I suppose it is mostly due to a fear of the unknown but damn, it is disconcerting to find out that everyone seems to be told different things like hold your breath, don't hold your breath. The radiation will be on my left side. During my initial CT scan last week I was told to "breathe normally".
Oh, and then there is the fact that I have been getting my period every month since December (I was still on FEC at this time and was until February). I have brought this up with my family doctor and my oncologist but neither one says it is anything to be worried about. Really?? Doesn't that indicate that my hormones are quite tenacious and are still pumping out food for any rogue cancer cells? My oncologist won't put me on Tamoxifen until I am finished radiation.
0 -
Foreverchanged72612 There are some women that don't do chemo and only do Tamoxifen. There are even women that are stage IV from the get go and start off only doing Tamoxifen. I can be a very powerful drug. My onc also doesn't start hormone therapy till after Rads.
0 -
Just saw my dermatologist for followup after removal of a basal cell cancer. She said she will not biopsy anything that looks suspicious while I am on chemo as chemo should take care of any skin cancers.
0 -
Walking. I was told the same thing about chemo and skin cancers.
0 -
Tonlee -
BA HA HA!!!!
I use the ear bud trick, too...but never had had to try it without my ipod. Thanks for the tip, lol! That is just TOO funny.
0 -
Glad it made a few of you smile.
I twisted my back while falling both times, so it is sore today. I am such a clutz.Oh yeah Dance, some guys hang out at the gym just to talk to women. They'll suck up all my time if I let them. So I have "faked" it pretty well....until my new workout shorts....the bottom of the cord was slapping me on the back of the leg as I walked away...lol
0 -
TonLee,
Thanks for the opinion on the ongoing cardiac risk. I haven't had a personal onc since 2006 and have only had rare occasional visits with naturopathic oncs since then so I don't have access for that other than thru my PCP (who specializes somewhat in cardiac matters).
My Rx is "C-testosterone 2% CR in vanacream" but is based on my individual hormonal levels. What is unknown is whether DHEA is about the same thing or not in actual results.
I think it is outstanding that your onc is reading the endo journals, as there seems to be a general lack of sharing info between endos and oncs, with oncs being more tuned in and responsive to the immediate crisis needs of HR negatives and less tuned in or responsive to the late recurrence of HR+. Some of the recommendations sort of end up slopping over onto HR+'s -- or at least, that is my impression -- especially in terms of very early stage bc. They have a hard time doing their homework well enough to provide clear recommendations.
After 10 very long years, they are finally starting to offer some baby steps toward some initial trials using no chemo, with trastuzumab and lapatinib for some HER2 patients.
Omaz and ArleneA,
I understand your question regarding the use of tamoxifen for HER2+'s. The matter of tamoxifen is focused on HR positivity and has been separate from the matter of HER2 positivity (although they are now backtracking a bit about that in that they think some who are less HER2 positive may still benefit from trastuzumab). But.... I cut back to half-dose tamoxifen after my first year of it as a very strongly ER+ patient, and then stopped it entirely at 1 3/4 yrs out because back in 2003-2004 studies were indicating that there was a group (about 1/4 to 1/3) of HER2 positives who did worse on tamoxifen. (Google AIB1 and tamoxifen.) I took the study about it to my PCP, who took it to my MO, who recommended I switch to an AI but never bothered to intelligently communicate with me as to the question of risk for use of tamoxifen with the subgroup of HER2 positives. So.... I wonder if the study involving 6,000 women is again generalizing about the recommendation for continuing use of tamoxifen for 10 years, and what the story is when it comes to the subgroup of HER2 positives in terms of AIB1? (There is no patient-available test for AIB1.)
Edited to add 2012 study:
http://www.ncbi.nlm.nih.gov/pubmed/23226788
Dx 12/3/2001 at age 51, IDC, 1.6 cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2+++; some DCIS; lumpectomy & SNB, CAFx6 (refused blood boosters), IMRT rads (with rads necrosis), tamoxifen x 1 3/4 yrs; no taxane, no trastuzumab, no aromatase inhibitor, no evidence of recurrence; primarily vegetarian organic diet, 1 hr exercise/day; melatonin, vitamin D3, low-dose metformin
0 -
Had my first visit with the onco today. Everyone at the center was wonderful and so kind. Made a pretty scary visit much easier. Took along my BFF who helped so much. I left stuff behind each time we moved to another area. She had to retrieve my stuff over and over! Moral and practical support... Getting an echocardiogram and meeting with radiology onco tomorrow. Have chemo training class next week and begin chemo May 13. Wow...comes fast and furious when it gets going. Thankfully I'm feeling so much better. Don't even miss that ol' gall bladder! Onco nurse gave me some tips on getting stronger for chemo, which I think will really help. She is a gem. All you ladies who have already gone through this, I really admire your strength and positive attitude. Your all a great inspiration for me as I begin my journey.
0 -
Karen I'm glad all is in lace--see it's not as scary as u think, once everything gets going.
0 -
Karen,
A chemo class sounds AWESOME! With the info you get there, and what you get here, you should be golden
Glad things went well for you...and thank goodness for BFFs!AA,
I'm sorry if this seems repetitive. I swear my brain is just not right the last week or so...but, the way I read it, you're using a testosterone vaginal cream? Does that then eek into the blood system? I want it for muscle, not VA so much. My Onc seemed to think that might entail getting a shot...but he said he didn't know the exact method but would do all the research if my endo won't work with me.
Right now I am in information gathering mode. Thank you for that info on what you use!
As far as Tamox for 10 years. I don't know if I am resistant, which is the primary reason I had an Ooph. I am going to ask my Endo to do a hormone panel on me and then we'll talk about what is missing/needed. Even if Tamox doesn't work for me at all....I just don't think there is enough estrogen left to grow anything....
Anyway, thanks again for the info! I have lots to find out and discuss with my endo...will share that info when I get it
0 -
TonLee, my testosterone was for libido (but any of it would help with muscle development). It was not a vaginal cream, but applied elsewhere. I am interested in the studies your onc noted about low-dose testosterone being protective. Without the added muscle and with dropping levels, weight management is more difficult.
The study indicated that a high AIB1 level may be a good prognostic indicator to use for ER- patients. Prior studies have shown that HER2+ patients who have a high AIB1 level do worse on tamoxifen, but what is not clear is whether those HER2+ patients also are ER- patients, or whether the subgroup of HER2+'s with a high AIB1 level who do worse on tamoxifen, do worse on it because of the tamoxifen, regardless of ER status. Is anyone here better at interpreting the studies? I'm not terrific at it, and am just raising the question.
0 -
AA,
I'm going to try and relay what he said to me. He looked at a study something like this:
"These observations suggest that the addition of testosterone to conventional hormone therapy for postmenopausal women does not increase and may indeed reduce the hormone therapy-associated breast cancer risk-thereby returning the incidence to the normal rates observed in the general, untreated population."
I believe he extrapolated that since testosterone when added to hormone therapy reduces BC risk, that using it without the HRT wouldn't increase my risk either.
Of course he had the actual journal data right on his computer ... but the summary above is basically the info he gave me at the time...
0 -
TonLee,
I was over age 50 at diagnosis, and have been using the low dose testosterone on a fairly regular basis without using an antihormonal ever since the trial in 2004, and have had no recurrence, and my hormonal levels are monitored. Assumably those who are interested in supplementing with testosterone are not pre-meno or peri-menopausal, and are thus experiencing the misery of having no libido. If they are younger at diagnosis and less menopausal upon completing tx, then they wouldn't be as motivated to use the testosterone.
Aging piled on top of tx left me medically advised to exercise 2 hrs a day 7 days a week plus maintain a spartan diet, with diminishing muscle mass to help me work off anything I ate. The testosterone helps me to build muscle that helps to limit weight gain. The low-dose metformin helps me, a non-diabetic, to metabolize intake better.
So I reduce the added risk that I would have from continuing weight gain. There are a lot of people on the antihormonals who are raising their risk level with weight gain, but who feel that the antihormonal will provide more protection than maintaining proper weight through use of low-dose testosterone.
Thanks for sharing good info,
A.A.
0
